This page contains a simple overview of Priapism. We will continue to update and change this page as more information becomes available.
The majority of males with sickle cell anaemia (HbSS) are likely to experience a priapism in their life time. However, Priapism is less common in males with sickle cell disease (HbSC+) and sickle beta thalassaemia (HbSB+).
Did you know that there are two common types of priapism?
Typically most males first experience priapism during early puberty. They can continue to experience priapism into their 30s and 40s.
You are more likely to experience priapism during the night and early hours of the morning.
This can mean that your sleep is interrupted due to priapism, which can cause tiredness and can interfere with studies and work.
If you are losing sleep because of priapism, discuss this with your haematologist or specialist nurse as they may be able to recommend treatments and helpful strategies
Most people have developed different strategies for dealing with their own priapism.
Males often report that the normal painkillers they use to treat their sickle cell crisis are not as effective in controlling the pain of priapism. Before trying a strategy for managing your own priapism it might be helpful to discuss it with your sickle cell nurse or haematologist.
If your priapism fails to respond to your normal treatment or strategies at home after two hours, you should go to the Emergency Department. Priapism which goes on for more than four hours is more likely to result in some long-term damage and erectile dysfunction.
The longer you remain at home with your priapism, the more likely it is that damage and severe pain in the tissue of the penis will occur. This increases the chances of tissue damage in the penis and loss of normal sexual function.
Although some of these treatments sound unpleasant, your urologist will make you as comfortable as possible. It is important to understand that your urologist is trying to prevent more severe and lasting damage, which can result in erectile dysfunction, and to treat this severe emergency.
While you are in hospital with a priapism you may also receive the common treatments that are used to manage a sickle cell crisis and this may include intravenous fluids, oxygen and antibiotics. In severe cases of priapism, exchange blood transfusions may be recommended by your haematologist. Surgery may also be required if the priapism fails to respond to the simple aspirations and injections by the urologist.
The earlier you go to the Emergency Department, the more likely it is that you will be treated successfully, which will reduce the risk of needing any surgery to solve the problem, or the risk of developing permanent erectile dysfunction.
Important note: In cases of priapism, time is function. Long delays will result in more damage and more severe erectile dysfunction.
Sometimes you may not want to seek medical attention for priapism because of embarrassment, and practical difficulties such as getting dressed and travelling to the hospital in the early hours with a severe priapism.
You might be unaware of the treatments available, or perhaps you are fearful of about what might happen when they come to hospital and how doctors and nurses might react.
Many patients therefore seek information about priapism from family members and friends with sickle cell disease. However, many of these people may be unable to recommend suitable treatments or strategies due lack of up-to-date medical knowledge. Many patients find it difficult to discuss the issue with female health care professionals, partners and friends, and are anxious about how their sexual function might be affected in the future.
Here is some helpful information that you will need to know if you are coming to the hospital with a priapism:
There are a number of common medicines that treat or prevent priapism. Your haematologist or urologist will talk to you about what is the best treatment to manage your type of priapism. It is important to understand that painkillers are not a direct treatment for your priapism, but will help you to manage the pain associated with this complication
During your review with the haematologist, the amount of painkillers you use and why will routinely be reviewed and if you or your haematologist has concerns about the amounts you are using, other treatments options for both the priapism and your sickle cell will be discussed.
If you are experiencing priapism episodes, you must mention this to your haematology team in clinic as they may recommend that you should be reviewed in our specialist priapism clinic.
Offers medical help and advice from fully trained advisers supported by experienced nurses and paramedics. Available over the phone 24 hours a day. t: 111
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Knowledge of this severe complication of sickle cell disease is often very poor. Many patients, parents and carers are not aware that priapism is a complication of sickle cell disease, or that there are risks associated with episodes of priapism. Patients are often reluctant to talk about priapism because of shyness and embarrassment.